Guillain-Barre Syndrome

Hi everyone - my husband was diagnosed with GBS almost nine years ago. I recently started a blog to tell Our Story - what we endured and how we're moving on today. I hope that it will bring some kind of a positive note to anyone that suffers. Please read if you can - we would love to hear your comments. God bless!!

hutchsstory.blogspot.com

Hi, my name is khutch. I'm here because my husband was diagnosed with GBS in April of 2016. He has improved somewhat, meaning he is off the ventilator, has much use of his arms and hands but nothing with his legs. He has been confined to a power wheelchair since then. We always loved to travel but when he got sick, we stopped. I guess it was around 2018 when he said "Let's try again" so we did. We packed up (ha! with all his stuff) and took a 3 day cruise. It was amazing! Lots of work and getting used to being in another atmosphere but here we are seven years later and we're cruising again and we go out every day to find new adventures.

#MightyTogether

I am glad to join this group as no one understands the bond that I have with my two dogs. I had an atypical case of guillian barre where I lost became weaker and weaker over the course six weeks to the point where I could not get up, walk, or sit up unassisted. One of my dogs was unable to go up the stairs. In the last few weeks before I went into the hospital I spent most of my time upstairs in my bedroom and the bath across the hall. I missed my dogs terribly. They didn’t see me differently I was still the person who gave them snuggles and they would still light up every time they saw me. They were the only ones who could make me forget the horror I was going through. I would gather all of the strength and energy I had to scoot down the stairs to see them. They brought me more love and comfort then anything else could at the time. For reference I have two cute gentle and lovable giant dogs so carrying them up the stairs was not an option. They continued to bring me joy and happiness post hospital stay and throughout my journey to recovery. They even learned to walk while I “chased” them trying to get their toy. The thing about dogs is that no matter what state you are in they will always see you as their person. I don’t think any of my family truly understands how much they helped me get to where I am today or how much they both truly mean to me. They kept me going when it would have been easy to give up. Even now while I have mostly recovered from my guillian barre they bring a smile to my face when I have bad days with my health from my other illnesses. #womansbestfriends #GuillainBarreSyndrome #Dysautonomia #Gastroparesis #SmallFiberNeuropathy

Hi, my name is Jdoherty_0215. I'm here because I acquired Guillain Barre Syndrome shortly after I had my Flu Shot. I have been struggling to recover for 4 years now and I am still unable to walk, I am in a wheelchair, and I am living in a Nursing Home. I now also suffer from depression and have PTSD. What makes me the most sad is that I cannot have my cat living with me in a Nursing Home. My cat is being taken care of by my sister, but I miss her dearly 😢

#MightyTogether

I am a mess. I’m a 71 year old widow. I am a GBS survivor. I have had 3 strokes. My granddaughter (23), her boyfriend (26), and my great granddaughter (6) had asked to stay with me temporarily as they were homeless. The boyfriend is not the father of my great granddaughter. They were with me from August until November. They left angry. After they left, my great granddaughter was taken by Social Services and placed in foster care. My granddaughter called me and asked if she and the boyfriend could stay with me a few days. I told them they could stay 3 nights. Am I being selfish? He has had 6 different jobs since August, and she has had 2. They are on ”suspension” from their current jobs. I am torn between wanting to help, but I have limited resources (on Social Security and a very small pension). I had to go on disability in 1996. Mentally I just can’t handle it. Thank you for reading.

Hi, my name is GreenLion27329. I'm here because I am looking for others who deal with these conditions on a day to day basis.

#MightyTogether #Lupus #GuillainBarreSyndrome #EpilepticHemiplegia #Asthma #COPD #ThyroidNodules #SjogrensSyndrome #di

Hi, my name is CatskillLily. I've been diagnosed with

#MightyTogether #Anxiety #Depression #PTSD #Grief #GuillainBarreSyndrome

At this point I've been waiting 13 months and 4 days for a proper wheelchair. It's been 2+ years since I've had physical therapy. My insurance covers exactly 7 sessions PER YEAR. When you've been diagnosed with Guillain-Barre syndrome and polyneuropathy (multiple nerve issues), that equals a drop in the bucket for the amount of therapy needed to get better. I've had multiple Dr's try to get me more but insurance has denied it. I'm coming up on 4 years of being bedridden, 4 years of being dependant on others for not only my needs but my son's. 4 years of passing the buck. 4 years of 'we cover transportation costs but now thar the pandemic is over you don't matter" so I can't get to appointments. In the last 18 mos I've been canceled on a lot. I finally have a case manager but I've not been able to see Dr s for over a year so certain meds haven't refilled. I understand yet wish they'd take into consideration I DON'T HAVE A WHEELCHAIR And HAVE BEEN TRYING TO GET IT SINCE JULY 2022! I've had 5 primary care providers too. Not by my own doing but because they've quit the Medi-Cal system. I'm at the mercy of Medi- cal. I can't afford to pay for private insurance. I'm not well enough to work but I'm too well to be considered disabled. WTF?!? I just want to get better for my 5yo and myself! So unhappy & very frustrated!!!

Hi, my name is Unrulychik. I'm here because I've been diagnosed with several autoimmune disorders. Vasculitis, GBS and Hashimotos. Prednisone is a bear..... and I'm a walking blimp.

#MightyTogether

Hi, my name is anonymous I want to learn more about caring for someone with guillain barre syndrome

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